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After the ice-bucket challenge, what next for ALS?

A big hockey fan, Skinner, 43, watched as a bucket of ice water was poured over Pittsburgh Penguins’ captain Sydney Crosby. Soon, everyone including Kermit the Frog was doing it, and, more importantly, talking about Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease.

Diagnosed with the progressive, degenerative disease in the fall of 2013. Skinner was given just two to five years to live. As one of just 3,000 people living with it in Canada, she felt like she was on her own — until she saw thousands cheering for her survival online.

Largely credited to two young Americans, Pete Frates and Pat Quinn, the ice-bucket challenge quickly became the meme of 2014, helping to raise more than a hundred million dollars worldwide for ALS.

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About 260,000 people donated to ALS Canada in just a few short months, earning a whopping $17 million over and above the $14 million the organization raised through its usual fundraising efforts.

Tammy Moore, the group’s CEO, said after Crosby posted his video, she and her staff snapped to and created a way for Canadians to direct their donations to ALS Canada.

“It wasn’t something that was planned by any of our organizations, but we were the very grateful recipients,” she said.

Although its incidence rate, or the number of people diagnosed each year, is similar to that for multiple sclerosis, its high mortality means that the disease is one of the rarest, she says.

It is also incredibly expensive. Moore estimates the cost of living with ALS to be between $150,000 and $250,000, including the cost of physical aids, lost income and emotional support.

The $17 million raised by ALS Canada will be split between helping people living with the disease and funding research.

About $7 million will go for support, while $10 million will go to research, in the hopes of finding a cure or treatment. Brain Canada, a government-funded brain research foundation, has matched these donations, bringing the total money available for research to about $20 million.

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Now, the organization must decide how to spend its riches, which comes with its own challenges. Should ALS Canada spend it all now, or spread it out over the next few years?

Moore said they chose to do a bit of both, earmarking $10 million to be distributed in 2015, funding creative projects that are working towards a treatment.

The rest will be distributed over the next couple years.

“We need to be able to continue to fund the research for the future, to ensure that we’re able to make progress that we want to,” Moore said. “So that when someone is diagnosed, it won’t be a terminable diagnosis; it will be treatable.”

Dr. Michael Strong, the dean of the Schulich School of Medicine and Dentistry at Western University, has been a pioneer in the field of ALS research for more than two decades. Although he no longer sits on the board of ALS Canada, he did for about 10 years.

ALS is an incredibly difficult disease to understand, Strong said, because, by the time people are diagnosed, the disease is already very advanced.

“Imagine you’re coming across a train wreck and somebody asks you to explain how it happened. You’re there at the end; that’s the problem,” he said.

But because of the small number of people living with the illness, it can be a challenge to find funding, Strong said. Most of the money being distributed by ALS Canada will go to what are known as “bridge” grants, which invest in new ideas that might not be ready for some of the larger national health grants.

“Those are hard grants to get,” he said. Often researchers find their budgets trimmed by up to 30 per cent, which makes their initial proposal all but undoable.

Moore is quick to note that if Canadians want to see this kind of exploratory research continue, they will need far more than just $17 million.

“The reality is that really is a drop in the bucket for what’s required,” she said. Moore doesn’t expect lightning to strike twice, and knows that the funds raised by 2014 ice bucket challenge are unlikely to be matched in later years. Still, she hopes people who gave once will give again.

Skinner said she and other advocates hope to bring the challenge back this August, and every August, until there’s a cure.

But in addition to the money, everybody agrees that one of the biggest gifts the ice-bucket challenge was an increased awareness of the disease, which, for so long, had flown below the radar.

When Strong first started treating the disease in the 90s, there was little knowledge of it, Moore.

“I would spend a lot of my time just explaining to families what it was,” he said.

But since the ice-bucket challenge, people have come to him with knowledge of their own. Moore said this increased awareness helped ALS Canada successfully lobby for a longer leave for compassionate care, and for helping people living with the disease feel less isolated.

“It was an illness without hope, and now I have hope,” Skinner said. “I feel blessed.”

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